Decisions, decisions ...

Late last week, I had a few/several good cries as I wrestled with the thought of deciding between a lumpectomy and a mastectomy based on the results of a re-stain of the second lesion in my left breast — the one that's near my known tumor, but the docs couldn't tell what kind it was.

No matter how I weighed the pros and cons of one surgery vs. the other, I felt hopelessly stuck — scared that if I didn't do enough, my risk of recurrence would be too high or that if I did too much, I'd regret putting my body through more hell than it needed to endure. Turns out I don't have to make that choice anymore. I'll need a mastectomy because the second lesion in my left breast is cancerous: ductal carcinoma in situ, or DCIS, not the lobular kind (LCIS), as the results of the biopsy initially suggested. So good riddance to that hopelessly stuck feeling. Now the decision I'm mulling is whether to get one or both breasts removed. Zoinks. Big decision. Turns out I have some time to think this whole thing through, and I feel super close to a game plan, after a follow-up consultation with the surgeon on my Seattle Cancer Care Alliance team: get my left breast removed right away, leave the right one alone while I go through chemo and radiation, then — if I still want my non-cancerous, or not-yet-cancerous right breast removed after treatment, I could get it removed and reconstructed during the reconstruction of my left breast. Choices, choices ... Gotta say, it feels strange to give you all these updates in such great detail. But writing about this is therapeutic for me — and on a very practical level, it frees me from having to explain all this over and over and over to the many people in my life who are wondering how this shitshow is going. Next steps:

1. Surgery on Thursday, July 30 (send ass-kicking vibes first thing in the morning).

2. An overnight stay at the hospital (Overlake in Bellevue).

3. About two weeks of downtime while I heal up.

4. A week with my dear friend/bridesmaid/former partner in writing crime during my newspaper days, Roxanne Martin, who's flying up from California to be here for me after this first battlefront.

5. Physical therapy to do all I can to prevent lymphedema — major arm swelling that can be a side effect of getting all the lymph nodes in your underarm scooped out.

More about those lymph nodes ... I haven't emphasized this much in my previous posts, but my SCCA second opinion team helped me get over the lymphedema fears that made me wonder if I could get as few nodes removed as possible — think axillary dissection "lite." They convinced me this would be a bad idea — SUPER bad — because knowing just how many lymph nodes are positive for cancer is SUPER valuable information about the risk that my breast cancer has spread anywhere else in my body. Not a pleasant thought to consider, but if there's any time to leave no stone (or lymph node) unturned, it's now. Still waiting for an OK to get a PET/CT scan that could show if there are any other signs of cancer beyond my breast and lymph nodes. A pathologist will slice and dice all the lymph nodes taken out during my surgery. If I have three or fewer lymph nodes that are positive for cancer, I might be able to avoid getting "red devil chemo" with Adriamycin, a whopper of a cancer-fighting drug with a couple side effects that I want nothing to do with: cardiomyopathy (serious weakening of the heart) and ... wait for it ... leukemia. Yes, that's right. A cancer drug that can give you cancer. It doesn't happen often, but it happens. My mom soldiered through red devil chemo and did just fine. But as a woman in my 40s with breast cancer, I'm all too familiar with that feeling of being in the single-digit odds of getting this pain-in-the-ass disease so young. So you can understand why I'm hoping that if I can skate past the red devil and get a "kinder, gentler" chemo, I'd be grateful. That's a decision I'll make some other day. For now ... I'll be spending the next week mulling the single vs. double question, and whether I'll say bye-bye to one or two breasts next Thursday. I'll be weighing lots of the issues outlined in this Fred Hutch essay by Diane Mapes, one of the intrepid breast cancer survivors I've connected with in recent weeks as I slog through all these decisions, decisions, decisions. Many of you have very kindly reminded me, "If there's anything we can do, let us know." If I took all of y'all up on that kind offer, I'd need a full-time assistant with access to Sean's and my work and family calendars to book all the help you want to give us. That'd be one heck of a big job ... too big for any one person to take on. We're getting close to figuring out a game plan for posting tasks in CaringBridge that you can sign up for, however/whenever you want to help. Stay tuned. And as always, thanks so much for being here for me. Whether you're near or far, it means the world.

#CaringBridge #cancer #SCCA #reddevil #FredHutch #lymphnodes #mastectomy

Come on, starting line ...

Just when I thought I was inches away from the starting line of my treatment, I get another wave of information — including differing interpretations of the results from my latest biopsy — that will require some more patience and fact-finding.

As emotionally draining as this waiting game is, the second opinion appointment Sean and I had at Seattle Cancer Care Alliance today was an amazingly insightful experience. We met with three top notch breast cancer specialists (a surgeon, a medical oncologist and a radiation oncologist), who carefully analyzed every piece of available evidence about my cancer, then met with us individually to discuss it all in great detail.

A pathologist and radiologist also reviewed my case. The pathologist recommended that slides from my latest biopsy — one of a second mass in my left breast — be re-stained to determine if it’s Ductal Carcinoma In Situ (a smallish cancerous tumor in the milk duct near my larger invasive tumor) or Lobular Carcinoma In Situ (abnormal cells that aren’t cancer but are indicators of higher cancer risk).

Group Health thinks my second left-breast tumor is LCIS. Seattle Cancer Care Alliance isn’t so sure.

I got Group Health’s LCIS diagnosis as I was gearing up to head into my second opinion appointment. I won’t lie — it took the wind out of my sails. I cried. I thought it meant that no matter what I do to get rid of the cancer I have now, I’d face a significantly elevated risk of getting cancer again in the future. Turns out it’s not that simple. Really, all that LCIS means is that I had an elevated risk for cancer, which we knew already because I have cancer. (Get it?)

If that lesion is LCIS, my SCCA surgeon said I could get a lumpectomy and at the same time have the LCIS excised along with enough tissue around it to find out if there’s any actual cancer there. If so, I’d need a mastectomy after chemo. If not, a lumpectomy would do the trick, and I’d move on to chemo.

If the lesion is DCIS, SCCA recommends a mastectomy, because the area that would need to be removed is at the outer edge of what they consider doable for a lumpectomy. And there’d be a risk that itsy bitsy cancer cells that don’t show up in x-rays, ultrasounds or MRIs could be hiding elsewhere in that same milk duct. (Little fuckers.)

Good golly, cancer is complicated. I’ve only scratched the surface of the new and developing information that we’re weighing as we zero in on what will be the most effective treatment plan. Here’s a hodgepodge of other considerations, bulleted to reduce the risk of your eyes glazing over and/or criss-crossing:

• The second tumor in my right breast is benign — yay!

• There don’t appear to be any funky lymph nodes on my right side.

• My SCCA docs recommend surgery before chemo, since my cancer is not the type that tends to shrink very much (if at all) in response to chemo. Also, finding out as much as possible about the extent of my cancer (especially exactly how many lymph nodes are cancerous) would be helpful in determining which chemo recipe(s) would be most effective for me.

• My SCCA medical oncologist recommends a PET/CT scan to determine if the cancer that’s in at least one of my lymph nodes has spread to any other areas of my body.

• SCCA is also recommending I seek a more comprehensive panel of genetic tests to determine if my cancer might be caused by any other mutations (aside from the BRCA1 and BRCA2 mutations that I don’t have). Apparently, BRCA mutations make only about a quarter of hereditary cancers.

• The benefit to that additional genetic testing is that there are specific therapies that could target specific genetic mutations, if I have them. More avenues of attack would be a good thing, though I’d still hope that there is no hereditary component to my cancer; I don’t want anyone else in my family to face a higher risk of cancer just because of their DNA.

• If I get a lumpectomy, my treatment would wrap up with radiation. If I get a mastectomy, I may or may not need radiation, depending on whether they think any cancer is lingering on my chest wall.

Lots (and lots and lots) of things to consider in the coming days. It’s doubtful that Group Health and/or SCCA can answer all the open questions in time for me to go ahead with my surgery on July 21, as originally scheduled. But the goal is to figure out which surgery is right for me and get it done as soon as possible.

And to think that this morning, going into this process, I had declared myself 99% certain I’d do chemo first to try to shrink my tumors and to get the hardest part of my treatment over with right off the bat.

Cancer: one complicated shitbird.

Now, close your eyes and picture that tagline on a billboard with me giving it the middle finger.

#CaringBridge #cancer #SCCA #BRCA #LCIS #DCIS

I'm on a roll ... more good news!

Happy breaking news, part 2: The biopsy results of the whatzamawhoozit in my right breast revealed NO CANCER! Benign with a capital B, baby! I wasn't expecting to find out so quickly — figured we'd be lucky to get the results before the July 4 weekend. Sure is nice to have this wait behind us.

I still need at least one, possibly two more biopsies, both MRI-guided (i.e., trickier): one of a relatively small mass that's close to my known tumor and possibly the second right-breast whatzamawhoozit (let's be real here, "area of concern" has way to clinical and ominous of a ring to it), which didn't show up on yesterday's ultrasound. Group Health's tumor review board meets tomorrow, and they're going to talk about these latest findings — then I'll confer with my oncologist and my surgeon about options and next steps. Love having so many eyeballs and brains on my case. The diligent, double-checking nerd in me is REALLY looking forward to my second opinion appointment at Seattle Cancer Care Alliance, slated for July 14. Some smart doctor friends of mine have taken a close look at my pathology report and are helping me formulate some questions I never would've thought to ask. It was nice to hear a Group Health nurse whom I've talked to several times applaud me today for being so patient and persistent about getting as much data as we possibly can before making major treatment decisions. It's pretty common for women to take a hurry-up-and-cut-that-shit-out-of-me attitude, which can add stress to the process of mapping out a treatment plan. When I first learned I had cancer, I wondered why they wouldn't offer me the option of getting my left boob lopped off on my way out of radiology. But knowing that it's likely been there a year or more makes me feel not so much panicked as determined to find out as much as possible and map out my treatment plan with careful confidence. In other Team Liz health news, I got my first ever root canal today — easy peasy piece o' cake. Had to get it done before chemo starts, because mouths are swimming with bacteria and dental procedures pose too great an infection risk for immunocompromised cancer patients. By the way ... poor root canals. They get such a bad rap, but the way they do them these days, you're in and out in an hour or so. Not much different than a filling. I'll have to forego the ibuprofen my endodontist said I'd need for what will likely be some moderate pain and inflammation in the next week. Have to steer clear of any blood-thinning meds for several days before my MRI-guided biopsy(ies). My busted-up pinky finger is healing day by day. Stitches came out a week ago, and I'll be wearing a splint for at least one more week. That's a wrap for now. Thanks, everyone, for all the words of support you've been posting here, on Facebook, sending in emails, texts and phone calls. I wish I could respond to each and every one of you each and every time and let you know you're making a difference by reminding me I've got this. There will be days when believing that will might take some convincing, and when I need it, I know you all be there for me in spades. As I've been saying a lot these days ... big hugs to you!

#CaringBridge #cancer #MRI #rootcanal